The AIDS Epidemic and Black Communities

Brian Lehrer: It's The Brian Lehrer Show on WNYC. Good morning again, everyone. It's Black History Month, the time when we look back at the hardships Black people in the United States have endured since they were first abducted to this continent, and highlight the glory of the community's achievements despite centuries of oppression. While recognizing this community's glory, its greatness born of grit, one might say, we must also acknowledge the blind spots stemming from what might be called a desire to rise above. We ask, what do you get when you combine a community seeking respect after a long history of indignity with a virus that thrives on shame affecting the most vulnerable in our population? For one thing, you get poems like this one heard on last week's episode of Blindspot, The Plague in the Shadows hosted by Kai Wright.

George Bellinger Jr: This poem talks about a family going to a funeral of a son who died of AIDS and how they respond to it. The mother was radiant, a two composed. She wore a black on black silk dress, which tied at the neck with a large bow and ended below the knee in a wide knife pleat. Her salt and pepper hair pulled into a --

Kai Wright: The poem goes on to describe the whole family's insistent cold dignity in this kind of detail until arriving at the deceased's lover.

George Bellinger Jr: Jeff unconsciously reached out to touch the pewter casket, but was intercepted by the mother. She whisked her hand away from the freezing politeness and said, "He's gone now."

Brian Lehrer: There's one excerpt from Blindspot on last week's episode. Kai, who is normally the host and managing editor of Notes from America heard here on Sunday nights at 6:00 and now of Blindspot, which WNYC produced with a history channel. Kai investigated how what's known as respectability politics amongst the Black community clashed with the AIDS epidemic in 1980s Harlem in particular. Kai is back with us now to share some of what he's found. Hi, Kai. Always great to have you on this show. How are you doing?

Kai Wright: I am well. Thanks for having me, Brian.

Brian Lehrer: Do you want to riff on that poem a little bit and that excerpt?

Kai Wright: Yes. There's a few things happening there that are worth naming. The poem is written by a person named Craig G. Harris, and it's published in 1986 in a collection called In the Life, which is a collection of Black gay writing at that time. The person reading it is George Bellinger Jr who is a friend of mine, somebody I've known for a long time, and covering and working on the epidemic and the Black community.

Craig was George's best friend. Craig died in 1991. At the time that book is published and that poem is published, it's a moment in which Black gay men, Black queer people in general so it's not just gay men, but it is primarily gay men with lesbians, transgender folks, and people who don't identify as any of those things, but that are part of the queer community the Black queer community, are looking up and saying, oh my goodness, this epidemic is uniquely relevant to us and no one cares.

What had been an arts movement, there had been this often unknown or undiscussed Black queer arts movement in the '80s in DC and in New York that George and Craig and all those folks were part of was starting to morph into an AIDS movement. You hear their art start to take it up. Craig, in that poem, starts taking up one of the core questions which is the ways in which our own community was responding to the epidemic and responding to us in our place in that community.

The scene of the AIDS funeral, which people who have followed this epidemic will be familiar with, where lovers and family members or lovers and friends and lives are erased by family because their lives were shameful to them. That's the scene that Craig is describing in that poem.

Brian Lehrer: Here's a clip of Craig Harris, who was not the reader of that poem in the first clip, but the person who wrote that poem, from a moment when he grabbed the mic at a 1986 conference of the American Public Health Association.

Craig G. Harris: Because they have been led to believe by the public health system and all forms of media to believe that people of color are not suffering from AIDS in significant numbers.

Kai Wright: In reality, almost 40% of people diagnosed with AIDS in the country at that very moment were either Black or Latino. He told them, maybe you'd notice this disparity if you let us speak more often.

Craig G. Harris: Please remember that as you are victims of a society which is institutionally racist, heterosexist, and classist, you may benefit from the experience and input of your Black, Latino, and Asian peers who are on the frontline fighting inadequate healthcare for our communities. Thank you very much.

Brian Lehrer: Kai, was the context of that 1986 clip that this American Public Health Association panel that he was speaking to had no diversity?

Kai Wright: That is the context, but it's really broader than that. Remember, that's the same year that he published that poem. The context is that year of this group of people waking up to we have to save ourselves. They were at that conference, Craig and a number of other of these Black queer activists that I'm talking about, to create an organization called the National Minority AIDS Council, which still exists today, that became the vehicle for challenging two things. One, challenging the Black community's failure to respond and to pay attention to the epidemic that was unfolding, and then challenging the public health communities and I'll have to say the broader white gay communities belief that this was an epidemic that was solely about white gay men.

Up until really that time, it was still very much in the public conversation and in the public health conversation focused on infections amongst a very particular group of people, which were white gay men from a handful of big cities. By that point, that was just no longer true of the epidemic, even of the documented cases. The context was them standing up, people like Craig who literally just stormed the stage at that time with a bunch of other people, took the mic and said, "Hey, we're not going to get anywhere if you don't start paying attention to us and in fact, letting us lead."

Brian Lehrer: In your reporting, you spoke with former Governor of New York, David Paterson, who before being governor was a representative of the state legislature from Harlem. Here's something he had to say in your show about our misunderstandings of the Black community in this context.

Former Governor David Paterson: The Black community I think is misunderstood in other parts of the city, and even the other parts of the country. The Black community is largely conservative, churchgoing, family-building, and intensely ambitious. I think there were people who worked hard, they were starting to get to places, and they at times probably felt that there was irresponsibility in the community that was holding them back.

Brian Lehrer: Former Governor David Paterson. Kai, does this get into the theme of the episode around what's known as respectability politics? I think not all of our listeners know that term, though many will, so maybe put that in some context and then in the context of your series.

Kai Wright: Yes. To start with, we wanted to try to help understand why the Black community, which is just a fact, Black traditional leadership took so long to confront this epidemic. We're talking about mainstream civil rights organizations. We're talking about the church leadership. We're talking about political clubs and elected officials. Why did it take so long for us to confront an epidemic that was in the data as early as the mid-'80s, so clearly overwhelmingly Black?

We set that story in Harlem specifically, though you could have told this story in a lot of places, but Harlem was one of the epicenters nationally early on. I talked to David Patterson because amongst the people alive today, he knows Harlem politics better than most. He's trying to explain there an idea in the community that people outside of the Black community may not fully understand and embrace.

This is going back to the early 20th century, a primary strain of Black politics was arguing- was what we now call Black excellence. We celebrate Black excellence now. That idea started in the early 20th century when the core ideas about racism were that Black people were inherently inferior, and so a really important political idea and organizing idea throughout the community's history has been proving that no, we are not inferior, and doing so over and over and over again.

There's been decades of debate about whether that's a fool's errand, but nonetheless, it is an important part of our politics. That has an edge to it because part of that is if people who feel strongly about that idea feel like if you are not doing your part in the community to prove our excellence, then you are bringing disrespect and disrepute on the community.

This was a really powerful idea in the '80s in particular at that it was a turning point. You have to remember it was the height of the crack epidemic. It was the onset of the Reagan administration. A lot of those people who we talk about who were in leadership positions had spent 20 years fighting for things that were being reversed already, and they just didn't have space for people in the community who they felt were not helping. This is an epidemic that, at the time, was still understood to be about drug users and promiscuous gay men, and neither were those of those two groups of people fell under [chuckles] respectable types of Black people.

Brian Lehrer: Anybody listening right now who maybe lived in Harlem in the 1980s or maybe was connected yourself to anybody in Black New York who had AIDS at the time, or maybe you yourself did, or who wants to ask Kai Wright a question about anything pertaining to his Blindspot series, 212-433-WNYC, 212-433-9692. Looking back to the 1980s, the series is Blindspot: The Plague in the Shadows, 212-433-9692, call or text.

Meanwhile, we're going to set up another clip because part of this lack of response, as you've already indicated, came from the religious leaders or some of them in the community at the time. Here's a clip of when you spoke with Pernessa Seele, who you credit with leading a crusade to convince Black clergy to get involved in the fight against AIDS.

Pernessa Seele: God hates homosexuals or God hates you because you doing drugs, or this is a raft of God or some-- Whatever negative destructive messaging that they got, most times they got it from the pulpit, the most influential place in our community.

Brian Lehrer: Want to talk about her or the context of that clip?

Kai Wright: Yes. As Pernessa says in that clip, as Governor Patterson says in the episode, is anybody certainly who has been active in the Black community for a very long time knows the Church is just hugely important. It's been a hugely important part of my life, I need to name. It's just a hugely- particularly on caretaking. There's so many times in my life growing up where my church, my mother's church, people from there intervened to make my life better, to make me safe, to take care of me when my parents weren't around. It's just a core function of that part of our community.

It did not do that in the AIDS epidemic at the beginning. Quite to the contrary it, as such a powerful institution, so many pastors at best we're ignoring it, and at worst, saying, "This is the wrath of God. We have to-- We can't-- You have to ignore these people. This is God's punishment for this kind of terrible behavior."

Penessa Seale, who you heard there, was someone who moved to New York at the height of the epidemic from Lincolnville, South Carolina, to work at Harlem Hospital as a social worker and to do epidemiological work on AIDS. She is a person of deep faith and deeply involved in the Church. She looked up and she's on the ward of this hospital and she's like, "Where is the Church? How come nobody's here praying with these people who are dying? That's what we do at the church. What's going on?"

She got angry. She began organizing in the Church to change that. She organized the first was called the Harlem Week of Prayer for the Healing of AIDS in, I want to say it was 1987. Now I'm going to get it wrong off the top of my head. She, that, year convinced 50 faith institutions in Harlem to come march around Harlem Hospital and pray with her. She was able to do that because she understood the church.

She was peer organizing, and she founded an organization called Balm In Gilead that still exists. It has thousands of faith institutions all around the world now. Mobilized in talking about educating, developing ministries around HIV and health in general in Black communities. It is one of the incredible successes of this epidemic. She changed hearts, she changed minds, and she saved lives. She's a really remarkable human being.

Brian Lehrer: Let's take a couple of phone calls. People are calling in who do remember the 1980s in this context. One of them in Harlem at the time is Lois in Denver today. Lois, you're on WNYC with Kai Wright. Thank you for calling in.

Lois: Good morning, both of you. Back in the '80s, I was in the whole ACT UP movement, but it became clear to me-- I was also working for the New York City AIDS hotline. There was a job up in East Harlem doing HIV prevention and counseling, and so I started taking what I was learning downtown uptown. It was overwhelming. I was so young. I'd just graduated from college, and in short, I then wrote a proposal to the City and became the director of the--

Got money to start the first housing for homeless [unintelligible 00:17:13] in the South Bronx. I went from working in Harlem up to the South Bronx.

I'm white. I'm married to a woman. I'm now a physician, but back then, I was just a college graduate doing all these things, just trying to figure things out and how to translate what I was learning downtown uptown. It was just unbelievable devastation in the communities.

One of the greatest memories I have from that time was I hired all of my recovering addicts to work in the program up in the South Bronx, and they were just amazing at working with the residents that we had in our program. My right-hand person was a Black woman who was very religious, came from her church, and was so proactive in helping the gay community and people with AIDS, whatever their struggle was. She and I were just completely connected at the hip in terms of how to run things. She was a nurse and it was just a amazing experience with beautiful people coming together to help a completely forgotten community.

Brian Lehrer: Kai, anything you want to-- [crosstalk]

Lois: I never call your show. I'm very shy.

Brian Lehrer: [laughter] You made a great debut, and so did your dog, by the way. Kai, you want to ask Lois anything about her oral history?

Kai Wright: First off, thank you so much, Lois, for sharing that. It just makes me think of so many people we have talked to and that I have known in my life who have very similar stories of-- You talk about you were just trying to figure it out at the time. There's so many people who were just trying to figure it out who had not set up their lives to be first responders to this epidemic but said, "Well, this is what I'm facing and I have to figure out how to do it," and just stepped up. It's just been so wonderful to hear all of their stories.

For many of them, Lois, I've noticed-- I think it's because of that, that it feels so-- When we go and ask them about it now, it feels so present tense for them. It feels like we're asking about things that happened just yesterday. I wonder if that's true for you as well that something about-- It sounds like you were young at the time. Maybe that's part of it too.

Lois: I was so young and overwhelmed. I wasn't ready to deal with people dying. One young man died in our facility because the hospital turned away. This, I still remember. I guess I can say his first name where I can just say his name, started with a C, and he died in their facility because the hospitals kept turning him away. He was just 23. He was gay. He was rejected by his family, and we weren't prepared to be a hospice at all. I was not. I was an international relations major. I'm now a physician.

It's interesting. I think that all of the feelings from that time were buried. Working through the COVID epidemic, I was working in Brooklyn during COVID in New York. Then all of that came to fore. It all came back. I was like, "Oh my God, this is my second epidemic I'm working through down there." I wasn't expecting that.

Brian Lehrer: Thank you. Thank you so much for contributing.

Lois: You're welcome.

Brian Lehrer: Some oral history to this segment. That was wonderful. Louie in Bedstuy remembers then too, and personally affected. You're on WNYC. Hi, Louie.

Louie: Yes, hi Brian. Hi, Kai. My name is Louie. I was a person diagnosed with HIV/AIDS in December of 1986. It's true, there was really no response in my community in Harlem. At the time of it, living in Harlem. I remember to get information or to get any type of support, I had to cross boundaries. I had to go downtown. I became a member of ACT UP New York, AIDS Coalition to Unleash Power. In that group activist group that was predominantly gay white men that people were dying. I didn't care. You know what I mean? I'm a Black man but I wanted the information because after a dear friend of mine died, I didn't know where to go with the anger and with the fear.

I just went to where I could get information, I could get help. It was because of that I was moved with a number of friends of mine to take over a building in Harlem, which still stands today as a grassroots response to the crisis. We took over a building. I was a heroin user at the time, IDU. Anyone coming out of prison or off the streets could find a place that had an open door where we didn't ask the question, when was the last time you used, when was the last time you ate? We just took you in. These formed our own intentional, functional, and conscious community [unintelligible 00:22:50] we still run today.

Brian Lehrer: Louis, let me ask you a question. When you first got involved with ACT UP, and I'm glad you said the whole name of it, because people probably in large numbers know the name, ACT UP as the activist group, or an activist group around the AIDS crisis back then, but have forgotten or never knew what it stood for, that it was an acronym for AIDS Coalition to Unleash Power, ACT UP. You found it mostly involving white activists. Did they embrace diversity over time once you and other people got involved, or did you find resistance?

Louie: I didn't find any resistance. I definitely found that they embraced me. They were members of ACT UP that I became a member of the housing committee because I was, at the time, living in a community shelter. They were very supportive with an idea that I and a few others had in regards to knowing a building at Brownstone 120th Street that wasn't being utilized. We thought, "Well, we can put it to good use." We took the building over. It was owned by a Catholic church and later we got in touch with the the priests that had the building and we were permitted to utilize the building.

Brian Lehrer: Of course, for people who were around then, housing was such a big issue for people with AIDS. That's how the group Housing Works, for example, got started. Louis, thank you very much. I'm going to get one more in here before we run out of time, Kai. Mendes in Jersey City, you're on WNYC. Hello, Mendes.

Mendes: Thanks, Brian. Kai, Great work. Thanks for your work. Actually, it was very close to me and personal. I was in Manhattan at the time, a young fella at Columbia University, but I do remember as a Haitian background, it was a double whammy because we had to face that crisis. It was so brutal for the Haitian community. It was almost embarrassing as a young Haitian American. We had a big march at on the Brooklyn Bridge. I participated. I was young, but always been an activist. Thanks for bringing this up. It was really the gay men of New York and the Haitians, it was horrible and I'll never forget that.

Brian Lehrer: There's one of the things that you're referring to that some listeners who weren't around then may not know, is that Haitians were inaccurately tagged as an independent risk group for AIDS and HIV. Is that part of what you're referring to?

Mendes: Of course, Brian. Of course, racism plays a role and it was really critical for us Haitian background because we were portrayed as people with disease, and at the time, people were dying.

Brian Lehrer: Yes, when it wasn't even true. Thank you. Thank you, Mendes, for your recollection. Kai, we've just got about a minute left. Anything on those last couple of callers or anything else as we go?

Kai Wright: Yes. Two quick things. One and I'm pretty sure I've met Louie because his work has been remarkable, and I think I've covered it in the past. It really reminds me, one of the core things about this history, when we think about a group like ACT UP, is there's so much mutual aid and caretaking in this history, and we think of the big activism. It's almost like the history of the Black Panthers. We think of the big public activism and civil disobedience, and that's super important, but a really big important part of these histories is the ways in which people like Louis stood up and took care of each other and created ways for people to come together when institutions were failing. That's something that I really have been inspired by.

The other thing I'll say is if I can just plug, coming up in a couple of weeks, February 25th, on Notes From America, we are going to do two-hour special of exactly this and just opening the phones and getting people to call us up and tell us their stories because this has touched so many people. If you didn't get to share your story in this segment, tune in a couple of weeks, you're going to get a chance to tell us.

Brian Lehrer: Hey, AIDS and HIV are still with us, as you know. Is it better now?

Kai Wright: Absolutely. You have to acknowledge process or progress. Absolutely. Infection rates continue to fall. Deaths have fallen dramatically. However, the best way to understand the epidemic now, to me, is with many other healthcare issues. If you are inside the health system, science has done its job. You can avoid infection. If you're infected, you can live a full healthy life. If you are outside the healthcare system, you do not have access to that science. It's 1985.

Brian Lehrer: We leave it there with Kai Wright, host and managing editor of Notes From America, our live national call-in show, Sunday nights at 6:00 on WNYC, and host now of this season of Blind Spot on AIDS in the 1980s in the respects that he's been describing in conjunction with the History Channel wherever you get your podcasts. Kai, thanks so much.

Kai Wright: Thank you, Brian.

 

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